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Kathl019
New Member


Date Joined Jun 2007
Total Posts : 4
   Posted 6/13/2007 12:35 PM (GMT -6)   
Looking back, how young were you when you started to have MS symptoms? Did you know or suspect that they could be related to MS? How long was the process before you were dx'd?
 
 
 
 
The weather has been so rainy for days! but...
"People who say sunshine brings happiness have never danced in the rain!" cool

snowdog
Regular Member


Date Joined May 2006
Total Posts : 137
   Posted 6/13/2007 1:42 PM (GMT -6)   
Hard questions. No easy answers.

After finally understanding MS, and being officially DX'd with it....you look back and remember this symptom "thought it was the flu" or that symptom "my legs seemed to heavy but I thought I was just tired" or something else jars your mind.
Was it the on slaught of MS? Who knows. According to the experts, we all had MS months or years before symptoms came about. Laying there dormant just waiting. Men especially tend to dimiss early symptoms. I was told that I most likely had MS
for a year or two before the symptoms and a ON attack put me down hard.

Did I suspect.....I never heard of MS. I thought is was like Parkinsons or Muscular Dys, much less knew the symptoms.

Process before DX. People on this forum and all across the country have been in what we call LIMBOLAND, for years with no
official DX. Some have so many leisons and symptoms that it is dx'd within a month. The problem lays with the process that is neccesary to give a DX and the complexity of the disease, and the added problem of "kissing cousins".

The norm would be that you have the symptoms, multiple leisons, postive lumbar puncture. The problem is that this is a norm that not many who have MS.......have. At least not at the begining.

The other problem is that doctors are as different in their knowledge of MS as the blades of grass on your lawn.

Many will suspect MS right away but will shy away from an official DX until they have ruled out every other possible look alike disease (and there are many). Autoimmune disorders are hard to pinpoint, even the ones that are not MS, much less this disease that almost everybody........has different symptoms. There is little consistency to MS. Making it very difficult to DX without the norm as I spoke about above.

In my case it was 6 months of test after test and misery, before they ruled out everything, and I lost part of my eyesight to ON, and was officially DX'd. Now a med team of 6 doctors have concluded that it is SPMS.

The sad thing is I was a lucky one. I was DX'd. There are so many that just don't know what is wrong with them. Although I read more and more that people that have been DX'd with MS for years and years have been mis-diagnoised.

As for the how young question? I have been introduced to an 6 year old and a 8 year old with confirmed DX's. The statistics say its a 20-40 disease. I got it when I was 58.

I think the 20-40 is another norm.....but this disease doesn't care about the norm.

Just my opinion, Just my thoughts

Dog

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 6/13/2007 2:19 PM (GMT -6)   
Kathl019 said...
Looking back, how young were you when you started to have MS symptoms? Did you know or suspect that they could be related to MS? How long was the process before you were dx'd?
 
 
 
 
The weather has been so rainy for days! but...
"People who say sunshine brings happiness have never danced in the rain!" cool
Snowdog gave an excellent answer. There is no "right" answer to this.  I was diagnosed at age 33 (back in 1983-4), and when the doctor started doing an extensive medical history, he suspected that I might have shown early symptoms as far back as 1968.  Which would be almost 40 years ago.  Once I started exhibiting major symptoms of "something" -- because I was fallling down unexpectedly and without cause, and thought I was having mini seizures, I went to a neurologist --
 
once I got that far, he told me later that he knew when I walked into his office that I likely had MS.  Took him 3 months to do the spinal tap, evoked potentials, and run other blood tests to rule out other things to finally name it. Note this was long before MRI's were even invented, much less used as a diagnostic tool for MS...
 
So I was 19-20 when I first started having what might have been symptoms.  33-34 when the diagnosis was made, 3 months from first inquiry to diagnosis. I'm now 60.  I knew nothing about MS; when the doctor told me that was his suspicion, I went to the library and found an old medical journal which described MS as "a neurological disorder that inevitably leads to severe disability and is ultimately terminal."  Now THAT's a pleasant thought for a summer day!  :)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kathl019
New Member


Date Joined Jun 2007
Total Posts : 4
   Posted 6/13/2007 2:51 PM (GMT -6)   
Thank you for sharing your experiences. I am new to this site and it is comforting (well, certainly not comforting, wrong choice of words) but easing in a sense to know that other people are going through the same things as my family and I and can relate and offer support. So thank you again. As I explained in an earlier post, I have many uncles and aunts, as well as my dad that suffer from MS. Now that they have been diagnosed and understand the disease, they look at me and see themselves many years ago before anyone suspected MS. I find the early stages of the disease to be so intriguing, especially that many people have had it for years before it was recognized, but simply could “make excuses” for the symptoms. I think it’s important to tell your stories… I know that it helped my family get diagnosed and on the road to treatment and understanding.
I am only 21 and seem to have textbook symptoms. I am currently seeing the same neurologist as my dad, aunts and uncles. The most embarrassing thing happened the other night and I am wondering if it has anything to do with my bizarre symptoms… I was hanging out with one of my friends whom I have not seen in ages and while we were just talking over a beer I wet myself! I apparently lost control of my bladder and didn’t realize it until he pointed it out! Needless to say I was mortified… and the night ended early. I have no idea why it happened and pray to God it never does again. Anyone ever experience something like this??

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 6/13/2007 3:14 PM (GMT -6)   
Loss of bladder control can happen for a lot of reasons, and particularly in a female. Women who are sexually active can sometimes bruise their bladder which can lead to loss of bladder control. Urinary tract infections are notorious for causing loss of bladder control, and they're not always easy to detect -- you don't necessarily have to experience itching or burning or spasms. Childbirth can injure the bladder and cause this.

And yes, a neurogenic bladder -- a bladder that doesn't work properly for several different reasons, and is common with MS-- can cause this. You should definitely report this to your neuro.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 6/14/2007 1:44 AM (GMT -6)   
Kathl019 said...
Looking back, how young were you when you started to have MS symptoms? Did you know or suspect that they could be related to MS? How long was the process before you were dx'd?
 
 
Hi there, welcome to the forum!
I was diagnosed at age 30 a month after my left leg went numb.  I had 6 brain lesions and 2 on my spine on my MRI and was diagnosed without further testing.
The fatigue had started months before but I never thought MS, even though its in my family too.  My uncle and great aunt both had it.  I guess because my uncle got it when he was a teenager I put it out of my mind as I got older.  Other than the fatigue, I don't think I'd had any other symptoms.  It kind of came on fast and furious I guess.
I wish you the best,
Shar
 
 

Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron

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